Terri Ruth here.  Sorry I haven't written:  the kids keep me well grounded.  Between games, doctor's appointments, or teacher's meetings, on top of doing domestic chores, one doesn't have much free time (meaning yours truly).  I hope you understand.

I find it hard to believe that our nine-year-old daughter, Nashi Danielle, has been gone over a year now.  She died one year ago, on March 2, 2009, of Canavan disease.  She started out seemingly okay, but then started exhibiting signs that something was very wrong.  After an extended battery of tests, it was found that she had a rare neurodegenerative disorder known as Canavan's.  It was extremely devastating, knowing that she would be dead in a few years.

It was terrifying to see our once-healthy baby lose one developmental milestone after another, as well as her physical skills.  By the time she was two, she was blind and could no longer walk; by the age of four, she was being fed by a tube and required twenty-four hour medical care.  Doctors said she'd be gone in a year or two at the most; she beat their predictions by five years.  She was nine.  It was a miracle that she lived as long as she did, but it was still heartbreaking, nevertheless, when she died in her bed.  I was the one who found her cold, grey, and lifeless.  I knew she was gone when I touched her.

Now, we have started a foundation in her name; we counsel other families with children who have Canavan's disease (or any other disease similar to it, but no less devastating); we talk about our children and point them to doctors or specialist who regularly deal with these illnesses so they can give the best care possible for their children, and we also pass out informative literature or point them to the latest information that can be found on the Internet.  People can also make donations to help keep our foundation afloat; the response has been nothing short of incredible!

While they are doing this, they learn about our family, in particular, Nashi, who touched so many people with her courage and will to live, even despite incredible disabilities that affected just about every aspect of her life.  Her memory lives on, and it always will.  It does help us cope knowing that she is in Heaven, with Jesus, running around and enjoying her new Home; she is now our angel, and we like to think that she is keeping an eye on us, waiting for that happy day when we will join her, when Jesus will come to take us Home to be with Him forever in glory!

Do we miss her?  Every single day!  There isn't a day where Hyman, Wally, or Tovah don't think of Nashi.  We miss her giggles, her big, liquid brown eyes, her soft, long dark-brown hair, her tiny snub nose, her smell, her very presence ...  she was a delight to have around, and we loved being with her!  We have since adopted a daughter, ALyssa, from Russia, almost a year ago, but she will never replace Nashi -- ever.  We also have adopted a little boy from India, Mordechai Daniel, who has proven to be full of mischief and fun; he is the perfect companion to his older brothers, Hyman and Wallace!

If we could ask God to bring Nashi back to life, believe me, we would, but knowing that He cannot, we can still honor her memory by talking about her, having pictures of her displayed around the house, and helping other families who are going through with what we did when Nashi was still alive.  It's all we can do.  We still have our days where we cry when we think of her, but thank God, they are growing less and less, and more days are spent in joy or laughter as we remember the cute little things she used to do to make us smile or giggle.

I am happy to say that Mordechai's cleft-palate surgery went without a hitch; he has since healed nicely; he looks like a normal little boy, and it is so good to see!  His little face was so messed up when he came to us from India; it broke our hearts!  And Alyssa doesn't even let the fact that she has eight fingers instead of ten get in the way of anything she does.  (She was born with two fingers missing on her left hand.  Otherwise she is fine.)  So while we lost one child with special needs, God gave us two more; we are enjoying them, yet always having Nashi not far from our thoughts, so she, in a sense, lives on as well.

Tovah and I are in the process of adding to our family yet again:  we have applied to adopt a fifth child!  That's right:  Hyman, Mordechai, Alyssa, and Wallace are going to have a new brother or sister!  We have applied to adopt a child from either Ethiopia or Libya.  Boy, girl, whether the child is healthy or has special needs ... it doesn't matter.  As long as we have room in our hearts to love them, then that's all that counts!  :)

Maybe Tovah and I are crazy to adopt a new child, but we are ready to take on the responsibility yet again and give a needy little child a home and a family that they need and give them the love they probably never even had!

We had a good Easter:  we went to morning services at our church (and on Saturday we celebrated the Sabbath at the temple; we are Messianic Jews; we celebrate both Jewish and Christian holidays, and we believe in salvation), and on Sunday, after church, we took the family out to eat and the kids had fun hunting for Easter eggs and enjoying their gifts that a certain little "rabbit" brought for them (I was the "rabbit", but they don't know it!  LOL).  I stressed to them that while the gifts are nice, the focus should be more on Jesus and the fact that He rose again from the dead; after all, that is the real reason behind Easter!

It was a nice day all around.  The weather was cool but sunny (we had snow the day before!!  Snow!  Can you believe it!), but at least the sun came back out the next day and melted the snow!  The kids had to wear their winter clothes to hunt for the eggs, but they still had a ball, nevertheless.  At least it wasn't rainy or thundering out!

Well, Mordechai is crying, so I'd best see what's up.  Must be the fact that he's ready to start the day.  I also have to get the others up so they can get ready for school or preschool.  I will write in here again soon; until then, this is Terri Ben Ami saying so long and Yeshua bless!

~Love, your friend in California, Terri Ruth.  :)

*to be continued.*